Kidney tumors that make erythropoietin

My doc wants me to have a CT to see if I have any benign kidney tumors. The crazy thing is the reason-I havent needed aranesp in months! Well she said it is possible that something could be stimulating it like a tumor -has anyone heard of this?

No I haven’t. I haven’t had the need for epo in over a year. I’ve read that sometimes when one has a good urr/kt/v that epo. may be produced at a better rate. The toxin buildup suppresses it. That I guess is why many folks have a lesser need for it than most people on incenter hd. The standards have changed recently for epo. and so last month they gave me a couple of drops lol hardly worth the effort. Lin.

Manisha, what caused your kidneys to fail? People with PKD tend to not need EPO because their kidneys are often still able to make enough.

it was glomerulosclerosis and ive needed it up to now

Hi Dori, I have pkd and needed epo. prior to starting dialysis, for a year. Once on dialysis the dose decreased slightly but they would cut me off once hgb. climbed… that was for over 3 1/2 yrs… Oddly enough after switching to another unit, and having protocol change I don’t have the need for very much at all. Recently they gave me a very small (drops!) amount. Lin.

If you were getting EPO by IV in your first clinic and subcutaneously in the second, it’s possible that getting EPO subcutaneously lowered the amount of EPO that was required to maintain your Hgb/Hct. The K/DOQI guidelines recommend that patients get EPO subcutaneously.

Some patients prefer to get EPO IV because they don’t have to get a shot. However, if they realized that the dosage and cost might be less, they might choose to get it subcutaneously.

It’s another one of those half a dozen of one and 6 of the other kinds of things. I’ll take mine as IV in my venous bloodline any day. About 3 years ago, it looked like the subcutaneous method had a higher risk of pure red cell aplasia. I’m not sure if that issue has been entirely resolved yet.

I found the following information in an eMedicine article about pure red cell aplasia (PRCA)

[i]Recent evidence indicates that recombinant EPO can induce PRCA in patients with chronic renal failure who had been on dialysis. Thirteen such cases were described by Casadevall et al in 2002 in the New England Journal of Medicine. Apparently, additional cases of EPO-related PRCA have been noted, bringing the total to approximately 38. Neutralizing anti-EPO antibodies were detected in these patients and considered to be involved in the development of PRCA.

– The basis for PRCA being due to EPO therapy is an enigma. Most of the cases have been reported in France and in patients undergoing renal dialysis. PRCA in these patients is usually severe, and it is unlikely that this would have been overlooked in the United States. Also, EPO-related PRCA has only been observed since 1998.

– Several possibilities should be considered. EPO used in France may have been manufactured by a different procedure than that used in the United States, and the manner of administration may be different. All patients who developed PRCA had been treated with subcutaneous EPO. Although EPO is administered subcutaneously to cancer patients in the United States, EPO is not administered by this route to patients with chronic renal failure in the United States. Home administration of EPO is practiced in Europe but not in the United States. Patients are provided syringes with the appropriate single EPO dose that they keep refrigerated until use, and improper storage may have caused EPO degeneration.

– Importantly, note that EPO-related PRCA appears to be a rare complication when one considers that approximately 3 million patients are treated with EPO worldwide. Nevertheless, maintain awareness of the possibility of this complication. In 2002, Casadevall et al recommended that patients receiving EPO should be tested for neutralizing anti-EPO antibodies as soon as possible after the onset of an unexplained anemia.

– Darbepoetin alfa (Aranesp) has recently been introduced and has a different carbohydrate structure than endogenous EPO. Patients receiving this agent should be monitored closely.

– Obviously, the administration of EPO for athletic performance should be avoided.

– Neutralizing anti-EPO antibodies should be obtained in patients who are not responding to EPO. Following an initial rise in Hgb levels, approximately 20% of patients do not have a sustained response to EPO. Possibly, the generation of anti-EPO antibodies occurs more commonly than suspected. The development of PRCA may represent the extreme end of the spectrum of EPO-induced immunological suppression of RBC production.

– In 2004, Bennet et al reported that between January 1998 and April 2004, 191 cases of epoetin-associated PRCA were reported. This occurred primarily with the Eprex brand name of epoetin alfa, and more than half of these cases were reported in France, Canada, the United Kingdom, and Spain. With appropriate procedures for storage, handling, and administration of Eprex to patients with chronic kidney disease, the exposure-adjusted prevalence rate decreased by 83%[/i]

I fond at least two errors in this statement.

  1. EPO in the U.S. is administered by the subcutaneous route in many centers.
  2. Home administration of EPO is practiced in the U.S. I don’t know how many patients in the U.S. self-administer EPO IV vs. subcutaneously, but suspect quite a few do subQ.

Prior to dialysis gave myself EPO but since starting dialysis have gotten it iv. My need for it has decreased. Lin.

Ok- sorry it took so long everyone, here is the the scoop. I already said I am about 10 years post diagnosis -renal disease, so sometimes the kidneys try (it seems unsuccessfully) to regenerate- thus people who are not polycystic can grow benign cysts on the kidneys and since they are renal cells in origin they may produce erythropoietin. So if you all of a sudden have stopped needing it (i.e.,epogen/aranesp) GET URSELF A CT QUICK! one of the other home patients had the same thing a few years back and it was MALIGNANT! --------BUT(there is good news) they caught with a routine ct ( it was very small and very early)and she did not even go off the transplant list ------AND got a kidney just months after. OH, and if they find nothing she says one repeat ct per year should be ok.

by the way if anyone wanted to know they did find the aforementioned cysts on my useless pee-makers -----but they are small and benign so far and we will keep watching them :?


Oh wow, thanks for that information!